Patients undergoing subacute rehabilitation have accurate expectations of their health-related quality of life at discharge

Background Expectations held by patients and health professionals may affect treatment choices and participation (by both patients and health professionals) in therapeutic interventions in contemporary patient-centered healthcare environments. If patients in rehabilitation settings overestimate their discharge health-related quality of life, they may become despondent as their progress falls short of their expectations. On the other hand, underestimating their discharge health-related quality of life may lead to a lack of motivation to participate in therapies if they do not perceive likely benefit. There is a scarcity of empirical evidence evaluating whether patients' expectations of future health states are accurate. The purpose of this study is to evaluate the accuracy with which older patients admitted for subacute in-hospital rehabilitation can anticipate their discharge health-related quality of life. Methods A prospective longitudinal cohort investigation of agreement between patients' anticipated discharge health-related quality of life (as reported on the EQ-5D instrument at admission to a rehabilitation unit) and their actual self-reported health-related quality of life at the time of discharge from this unit was undertaken. The mini-mental state examination was used as an indicator of patients' cognitive ability. Results Overall, 232(85%) patients had all assessment data completed and were included in analysis. Kappa scores ranged from 0.42-0.68 across the five EQ-5D domains and two patient cognition groups. The percentage of exact correct matches within each domain ranged from 69% to 85% across domains and cognition groups. Overall 40% of participants in each cognition group correctly anticipated all of their self-reported discharge EQ-5D domain responses. Conclusions Patients admitted for subacute in-hospital rehabilitation were able to anticipate the discharge health-related quality of life on the EQ-5D instrument with a moderate level of accuracy. This finding adds to the foundational empirical work supporting joint treatment decision making and patient-centered models of care during rehabilitation following acute illness or injury. Accurate patient expectations of the impact of treatment (or disease progression) on future health-related related quality of life is likely to allow patients and health professionals to successfully target interventions to priority areas where meaningful gains can be achieved.

What do emergency physicians think of law?

What do emergency physicians think of law? Do they know the law? What role does it have in the practice of emergency medicine? Emergency physicians in New South Wales, Victoria and Queensland are being asked about these issues in a study by the Queensland University of Technology, Brisbane, Australia, titled ‘Withholding and withdrawing life-sustaining treatment from adults who lack capacity: The role of law in medical practice’. The study aims to examine the role that law plays in decisions to withhold or withdraw life-sustaining treatment from adults who lack capacity.

Exercise for health : a randomized, controlled trial evaluating impact of a pragmatic, translational exercise intervention on quality of life, function and treatment-related side effects following breast cancer

Purpose Exercise for Health was a randomized, controlled trial designed to evaluate two modes of delivering (face-to-face [FtF] and over-the-telephone [Tel]) an 8-month translational exercise intervention, commencing 6-weeks post-breast cancer surgery (PS). Methods Outcomes included quality of life (QoL), function (fitness and upper-body) and treatment-related side effects (fatigue, lymphoedema, body mass index, menopausal symptoms, anxiety, depression and pain). Generalised estimating equation modelling determined time (baseline [5-weeks PS], mid-intervention [6-months PS], post-intervention [12-months PS]), group (FtF, Tel, Usual Care [UC]) and time-by-group effects. 194 women representative of the breast cancer population were randomised to the FtF (n=67), Tel (n=67) and UC (n=60) groups. Results: There were significant (p<0.05) interaction effects on QoL, fitness and fatigue, with differences being observed between the treatment groups and the UC group. Trends observed for the treatment groups were similar. The treatment groups reported improved QoL, fitness and fatigue over time and changes observed between baseline and post-intervention were clinically relevant. In contrast, the UC group experienced no change, or worsening QoL, fitness and fatigue, mid-intervention. Although improvements in the UC group occurred by 12-months post-surgery, the change did not meet the clinically relevant threshold. There were no differences in other treatment-related side-effects between groups. Conclusion This translational intervention trial, delivered either face-to-face or over-the-telephone, supports exercise as a form of adjuvant breast cancer therapy that can prevent declines in fitness and function during treatment and optimise recovery post-treatment.

Relationships between appetite and quality of life in hemodialysis patients

The aim of this paper was to investigate the association between appetite and Kidney-Disease Specific Quality of Life in maintenance hemodialysis patients. Quality of Life (QoL) was measured using the Kidney Disease Quality Of Life survey. Appetite was measured using self-reported categories and a visual analog scale. Other nutritional parameters included Patient-Generated Subjective Global Assessment (PGSGA), dietary intake, body mass index and biochemical markers C-Reactive Protein and albumin. Even in this well nourished sample (n=62) of hemodialysis patients, PGSGA score (r=-0.629), subjective hunger sensations (r=0.420) and body mass index (r=-0.409) were all significantly associated with the Physical Health Domain of QoL. As self-reported appetite declined, QoL was significantly lower in nine domains which were mostly in the SF36 component and covered social functioning and physical domains. Appetite and other nutritional parameters were not as strongly associated with the Mental Health domain and Kidney Disease Component Summary Domains. Nutritional parameters, especially PGSGA score and appetite, appear to be important components of the physical health domain of QoL. As even small reductions in nutritional status were associated with significantly lower QoL scores, monitoring appetite and nutritional status is an important component of care for hemodialysis patients.

A longitudinal study of health-related quality of life, fatigue and physical activity in chronic kidney disease patients

This study assessed the health-related quality of life (HRQoL), fatigue and physical activity levels of 28 persons with chronic kidney disease (CKD) on initial administration of an erythropoietin stimulating agent, and at 3 months, 6 months and 12 months. The sample comprised of 15 females and 13 males whose ages ranged from 31 to 84 years. Physical activity was measured using the Human Activity Profile (HAP): Self-care, Personal/Household work, Entertainment/Social, Independent exercise. Quality of life was measured using the SF-36 which gives scores on physical health (physical functioning, role-physical, bodily pain and general health) and mental health (vitality, social functioning, role-emotional and emotional well-being). Fatigue was measured by the Fatigue Severity Scale (FSS). Across all time points the renal sample engaged in considerably less HAP personal/household work activities and entertainment/social activities compared to healthy adults. The normative sample engaged in three times more independent/exercise activities compared to renal patients. One-way Repeated measures ANOVAs indicated a significant change over time for SF-36 scales of role physical, vitality, emotional well-being and overall mental health. There was a significant difference in fatigue levels over time [F(3,11) = 3.78, p<.05]. Fatigue was highest at baseline and lowest at 6 months. The more breathlessness the CKD patient reported, the fewer activities undertaken and the greater the reported level of fatigue. There were no significant age differences over time for fatigue or physical activity. Age differences were only found for SF-36 mental health at 3 months (t=-2.41, df=14, p<.05). Those younger than 65 years had lower emotional well-being compared to those aged over 65. Males had poorer physical health compared to females at 12 months. There were no significant gender differences on mental health at any time point. In the management of chronic kidney disease, early detection of a person’s inability to engage in routine activities due to fatigue is necessary. Early detection would enable timely interventions to optimise HRQoL and independent exercise.

Does the addition of integrated cognitive behaviour therapy and motivational interviewing improve the outcomes of standard care for young people with comorbid depression and substance misuse?

Background: The high rates of comorbid depression and substance use in young people have been associated with a range of adverse outcomes. Yet, few treatment studies have been conducted with this population. Objective: To determine if the addition of Motivational Interviewing and Cognitive Behaviour Therapy (MI/CBT) to standard alcohol and other drug (AOD) care improves the outcomes of young people with comorbid depression and substance use. Participants and Setting: Participants comprised 88 young people with comorbid depression (Kessler 10 score of > 17) and substance use (mainly alcohol/cannabis) seeking treatment at two youth AOD services in Melbourne, Australia. Sixty young people received MI/CBT in addition to standard care (SC) and 28 received SC alone. Outcomes Measures: Primary outcome measures were depressive symptoms and drug and alcohol use in the past month. Assessments were conducted at baseline, 3 and 6 months follow up. Results and Conclusions: The addition of MI/CBT to SC was associated with a significantly greater rate of change in depression, cannabis use, motivation to change substance use and social contact in the first 3 months. However, those who received SC had achieved similar improvements on these variables by 6 months follow up. All young people achieved significant improvements in functioning and quality of life variables over time, regardless of the treatment group. No changes in alcohol or other drug use were found in either group. The delivery of MI/CBT in addition to standard AOD care may offer accelerated treatment gains in the short-term.

The effect of Tai Chi on health related quality of life in people with elevated blood glucose or diabetes : a randomized controlled trial

Purpose The aim was to assess the effects of a Tai Chi based program on health related quality of life (HR-QOL) in people with elevated blood glucose or diabetes who were not on medication for glucose control. Method 41 participants were randomly allocated to either a Tai Chi intervention group (N = 20) or a usual medical care control group (N = 21). The Tai Chi group involved 3 x 1.5 hour supervised and group-based training sessions per week for 12 weeks. Indicators of HR-QOL were assessed by self-report survey immediately prior to and after the intervention. Results There were significant improvements in favour of the Tai Chi group for the SF36 subscales of physical functioning (mean difference = 5.46, 95% CI = 1.35-9.57, P < 0.05), role physical (mean difference = 18.60, 95% CI = 2.16-35.05, P < 0.05), bodily pain (mean difference = 9.88, 95%CI = 2.06-17.69, P < 0.05) and vitality (mean difference = 9.96, 95% CI = 0.77-19.15, P < 0.05). Conclusions The findings show that this Tai Chi program improved indicators of HR-QOL including physical functioning, role physical, bodily pain and vitality in people with elevated blood glucose or diabetes who were not on diabetes medication.

Factors influencing caregiver : care receiver communication and its impact on the well-being of older care receivers

Examined communication between frail older people and their caregiving spouses (CGSs), and its relation to well-being in older care receivers. 53 community residing spousal dyads completed questionnaires about their well-being, relational satisfaction, and communication patterns. Conversations between the dyads were also videotaped and analyzed. The type of communication used by the CGSs was influenced by their sex, their earlier relationship with their spouse, and their level of well-being. CGSs who used an overly directive communication tone with their spouse were likely to be wives and CGSs who had a high degree of autonomy in their earlier relationship with their spouse. Low levels of life satisfaction and high affect balance in CGSs were associated with CGSs using a more patronizing tone. The well-being of care receivers was also related to their perceptions of their CGSs' communication. Care receivers who perceived their CGSs' communication as patronizing reported low levels of affect balance and high levels of conflict in the relationship. Findings suggest that certain characteristics of CGSs are related to the type of communication they use when conversing with their partner, although the relations are not always as expected.

Withholding and withdrawal of ‘futile’ life-sustaining treatment : unilateral medical decision-making in Australia and New Zealand

This article examines the law in Australia and New Zealand that governs the withholding and withdrawal of ‘futile’ life-sustaining treatment. Although doctors have both civil and criminal law duties to treat patients, those general duties do not require the provision of treatment that is deemed to be futile. This is either because futile treatment is not in a patient’s best interests or because stopping such treatment does not breach the criminal law. This means, in the absence of a duty to treat, doctors may unilaterally withdraw or withhold treatment that is futile; consent is not required. The article then examines whether this general position has been altered by statute. It considers a range of suggested possible legislation but concludes it is likely that only Queensland’s adult guardianship legislation imposes a requirement to obtain consent to withhold or withdraw such treatment.

A systematic review on quality of life among patients at 1 year after treatment for head and neck cancer

Introduction: Although advances in treatment modalities have improved the survival of head and neck (H&N) cancer patients over recent years, survivors’ quality of life (QoL) could be impaired for a number of reasons. The investigation of QoL determinants can inform the design of supportive interventions for this population. Objectives: To examine the QoL of H&N cancer survivors at 1 year after treatment and to identify potential determinants affecting their QoL. Methods: A systematic search of literature was done in December 2011 in five databases: Pubmed, Medline, Scopus, Sciencedirect and CINAHL, using combined search terms ‘head and neck cancer’, ‘quality of life’, ‘health-related quality of life’ and ‘systematic review’. The methodological qualities of selected studies were assessed by two reviewers using predefined criteria. The study characteristics and results were abstracted and summarized. Results: Thirty-seven studies met all inclusion criteria with methodological quality from moderate to high. The global QoL of H&N cancer survivors returned to baseline at 1 year after treatment. Significant improvement showed in emotional functioning while physical functioning, xerostomia, sticky/insufficient saliva, and fatigue were consistently worse at 12 months compared with baseline. Age, cancer sites and stages, social support, smoking, presence of feeding tube are significant QoL determinants at 12 months. Conclusions: Although the global QoL of H&N cancer survivors recover by 12 months after treatment, problems with physical functioning, fatigue, xerostomia and sticky saliva persist. Regular assessment should be carried out to monitor these problems. Further research is required to develop appropriate and effective interventions for this population.

Using images to communicate the hidden struggles of life on dialysis

Background: Nurse-patient communication in the hemodialysis context is unique given the amount of time spent together in a confined clinical room. Poor communication may lead to low quality nursing care and undesirable patient outcomes. Aim: To explore the use of images as a visual communication technique for nurses and patients in the hemodialysis context. Methods: Descriptive qualitative design. Fifty two cards containing specific photos, illustrations and words were used in conversations between patients (n = 9) and one of two nurse interviewers about being on hemodialysis. Interview transcripts were thematically analysed. Findings: An overall theme titled ‘revealing the hidden struggles of living on dialysis’ conceptually captured three sub-themes: (1) the increased importance of relationships; (2) the struggle with money; and (3) quality over quantity of life. The cards assisted in uncovering these often covert (to nurses) aspects of dialysis patients’ lives. Conclusion: Nurses may need to be aware of the dialysis patients’ hidden struggles which include the importance of relationships, financial issues and the importance of quality aspects such as travel. The use of images may assist in revealing the important issues for each patient struggling with the restrictive life that is imposed by dialysis.

Development of a children's acute cough specific quality of life questionnaire (Pac-Qol)

The high burden of parental concern in children with chronic cough has been well documented. Acute cough in children (lasting less than 2 weeks) also has a significant impact on families, reflected by the number of doctor visits for cough. Currently there is no validated acute cough specific quality of life (QOL) measure for children. The objective of this study is to develop and validate an acute cough specific QOL questionnaire (PAC-QOL) for paediatric use. Here we present our data on item selection. Methods Two independent focus groups were conducted to determine relevant items. Parents discussed the impact of their child’s current or previous episodes of acute cough on their child, themselves and their family functioning. Transcripts were analyzed to determine whether discussions had reached an item saturation point. Items were also compared against our previously validated parent-centred children’s chronic cough specific QOL questionnaire (PC-QOL), which was used as a model. The newly developed acute cough specific QOL questionnaire is designed to assess the level of frequency of parents’ feelings and worry related to their child’s acute cough, using a 24-h time-point reference. Results Newly identified acute cough specific items include parental worry around whether or not they should take their child to a doctor or emergency department, and frequency of seeking assistance from friends and family. Conclusions While there are similarities between items identified for both acute and chronic cough, there are distinct features. Further data will be collected for item reduction and validation of this children’s acute cough specific QOL questionnaire.

An evaluation of dog-assisted therapy for residents of aged care facilities with dementia.

Although some research suggests that dog-assisted therapy may be beneficial for people with dementia living in residential aged care facilities, the intervention has not been adequately investigated. To address this shortcoming, we conducted a randomized controlled trial of dog-assisted therapy versus a human-therapist-only intervention for this population. Fifty-five residents with mild to moderate dementia living in three Australian residential aged care facilities completed an 11-week trial of the interventions. Allocation to the intervention was random and participants completed validated measures of mood, psychosocial functioning, and quality of life (QOL), both prior to and following the intervention. No adverse events were associated with the dog-assisted intervention, and following it participants who had worse baseline depression scores demonstrated significantly improved depression scores relative to participants in the human-therapist-only intervention. Participants in the dogassisted intervention also showed significant improvements on a measure of QOL in one facility compared with those in the human-therapist-only group (although worse in another facility that had been affected by an outbreak of gastroenteritis). This study provides some evidence that dog-assisted therapy may be beneficial for some residents of aged care facilities with dementia.

SRL 172 (killed Mycobacterium vaccae) in addition to standard chemotherapy improves quality of life without affecting survival, in patients with advanced non-small-cell lung cancer : phase III results

Background: This open-label, randomised phase III study was designed to further investigate the clinical activity and safety of SRL172 (killed Mycobacterium vaccae suspension) with chemotherapy in the treatment of non-small-cell lung cancer (NSCLC). Patients and methods: Patients were randomised to receive platinum-based chemotherapy, consisting of up to six cycles of MVP (mitomycin, vinblastine and cisplatin or carboplatin) with (210 patients) or without (209 patients) monthly SRL172. Results: There was no statistical difference between the two groups in overall survival (primary efficacy end point) over the course of the study (median overall survival of 223 days versus 225 days; P = 0.65). However, a higher proportion of patients were alive at the end of the 15-week treatment phase in the chemotherapy plus SRL172 group (90%), than in the chemotherapy alone group (83%) (P = 0.061). At the end of the treatment phase, the response rate was 37% in the combined group and 33% in the chemotherapy alone group. Patients in the chemotherapy alone group had greater deterioration in their Global Health Status score (-14.3) than patients in the chemotherapy plus SRL172 group (-6.6) (P = 0.02). Conclusion: In this non-placebo controlled trial, SRL172 when added to standard cancer chemotherapy significantly improved patient quality of life without affecting overall survival times. © 2004 European Society for Medical Oncology.