Factors limiting participation in arthritis self-management programmes : an exploration of barriers and patient preferences within a randomized controlled trial

Objective. To improve understanding of barriers to participation in community-based arthritis self-management programmes and patient preferences for self-management education.

Methods. Individuals with hip or knee OA referred to orthopaedic surgeons or rheumatologists at six public and private hospitals in Victoria, Australia, were recruited for a randomized controlled trial (RCT) of the Stanford Arthritis Self-Management Programme (ASMP). As part of the study design, potential participants were asked during the screening and recruitment process about reasons for being unable to attend the course, reasons for not participating in the study and individual preferences for course scheduling.

Results. Of 1125 individuals assessed, 216 (19%) were unable to attend six ASMP sessions. This was commonly due to physical limitations, including illness, restricted mobility and pain (22%), difficulty getting to or from courses (22%), work commitments (22%), the time commitment required (17%) and family roles (12%). Among those who did not want to participate in the study (n = 258), the overwhelming reason was disinterest (74%). Specific preferences for course scheduling were frequent, confirming the practical challenges faced in organizing courses for the RCT.

Conclusion. Incorporating patients from public and private settings, this study has elicited new insights into barriers to ASMP participation. Many people with hip or knee OA have limited capacity and motivation to attend community-based group programmes. Future self-management programmes and research should include more accessible options for those who cannot attend group-based programmes.

Perceptions of individuals living with spinal cord injury toward preference-based quality of life instruments : a qualitative exploration

BACKGROUND: Generic preference-based health-related quality of life instruments are widely used to measure health benefit within economic evaluation. The availability of multiple instruments raises questions about their relative merits and recent studies have highlighted the paucity of evidence regarding measurement properties in the context of spinal cord injury (SCI). This qualitative study explores the views of individuals living with SCI towards six established instruments with the objective of identifying 'preferred' outcome measures (from the perspective of the study participants). METHODS: Individuals living with SCI were invited to participate in one of three focus groups. Eligible participants were identified from Vancouver General Hospital's Spine Program database; purposive sampling was used to ensure representation of different demographics and injury characteristics. Perceptions and opinions were solicited on the following questionnaires: 15D, Assessment of Quality of Life 8-dimension (AQoL-8D), EQ-5D-5L, Health Utilities Index (HUI), Quality of Well-Being Scale Self-Administered (QWB-SA), and the SF-36v2. Framework analysis was used to analyse the qualitative information gathered during discussion. Strengths and limitations of each questionnaire were thematically identified and managed using NVivo 9 software. RESULTS: Major emergent themes were (i) general perceptions, (ii) comprehensiveness, (iii) content, (iv) wording and (v) features. Two sub-themes pertinent to content were also identified; 'questions' and 'options'. All focus group participants (n = 15) perceived the AQoL-8D to be the most relevant instrument to administer within the SCI population. This measure was considered to be comprehensive, with relevant content (i.e. wheelchair inclusive) and applicable items. Participants had mixed perceptions about the other questionnaires, albeit to varying degrees. CONCLUSIONS: Despite a strong theoretical underpinning, the AQoL-8D (and other AQoL instruments) is infrequently used outside its country of origin (Australia). Empirical comparative analyses of the favoured instruments identified in this qualitative study are necessary within the context of spinal cord injury.

Insulin delivery devices

Everyone with type 1 diabetes requires insulin from diagnosis and more than 30% of people with type 2 diabetes eventually need insulin because of progressive failure of pancreatic beta cells. People with type 2 diabetes are often reluctant to commence insulin and some will require assistance with their injections. Over the past five years a number of new insulin delivery systems have become available that can make insulin administration easier. A number of factors, including patient preference, influence the choice of device. A thorough assessment of the individual's self-care capacity is important and appropriate education is imperative when starting insulin.

Pain relief for the removal of femoral sheath in interventional cardiology adult patients (Review)

Pain relief for removal of femoral sheath after cardiac procedures
Procedures for the non-surgical management of coronary heart disease include balloon angioplasty and intracoronary stenting. At the start of each procedure an introducer sheath is inserted through the skin (percutaneously) into an artery, frequently a femoral artery in the groin. This allows the different catheters used for the procedure to be exchanged easily without causing trauma to the skin. At the end of the procedure the sheath is removed and, if the puncture site isn't "sealed" using a device closure, firm pressure is required over the site for 30 minutes or more to control any bleeding and reduce vascular complications. Removing the sheath and the firm pressure required to control bleeding can cause pain, although this is generally mild. Some centres routinely give pain relief before removal such as intravenous morphine, or an injection of a local anaesthetic in the soft tissue around the sheath (called a subcutaneous injection). Adequate pain control during sheath removal is also associated with a reduced incidence of a vasovagal reaction, a potentially serious complication involving a sudden drop of blood pressure and a slowed heart rate. Four studies were reviewed in total. Three trials involving 498 participants compared subcutaneous lignocaine, a short acting local anaesthetic, with a control group (participants received either no pain relief or an inactive substance known as a placebo). Two trials involving 399 people compared intravenous opioids (fentanyl or morphine) and an anxiolytic (midazolam) with a control group. One trial involving 60 people compared subcutaneous levobupivacaine, a long acting local anaesthetic, with a control group. Intravenous pain regimens and subcutaneous levobupivacaine appear to reduce the pain experienced during femoral sheath removal. However, the size of the reduction was small. A significant reduction in pain was not experienced by participants who received subcutaneous lignocaine or who were in the control group. There was insufficient data to determine a correlation between pain relief administration and either adverse events or complications. Some patients may benefit from routine pain relief using levobupivacaine or intravenous pain regimens. Identifying who may potentially benefit from pain relief requires clinical judgement and consideration of patient preference. The mild level of pain generally experienced during this procedure should not influence the decision as some people can experience moderate levels of pain.

Content validity of visual analog scales to assess symptom severity of acute angioedema attacks in adults with hereditary angioedema : an interview study

Background: Hereditary angioedema (HAE) is a rare, debilitating, potentially life-threatening condition characterized by recurrent acute attacks of edema of the skin, face/upper airway, and gastrointestinal and urogenital tracts. During a laryngeal attack, people with HAE may be at risk of suffocation, while other attacks are often associated with intense pain, disfigurement, disability, and/or vomiting. The intensity of some symptoms is known only to the person experiencing them. Thus, interview studies are needed to explore such experience and patient-reported outcome measures (PROMs) are required for systematic assessment of symptoms in the clinical setting and in clinical trials of treatments for acute HAE attacks.

Objective: The aim of this interview study was to assess the content validity and suitability of four visual analog scale (VAS) instruments for use in clinical studies. The VAS instruments were designed to assess symptoms at abdominal, oro-facial-pharyngeal-laryngeal, peripheral, and urogenital attack locations. This is the first known study to report qualitative data about the patient's experience of the rare disorder, HAE.

Methods: Semi-structured exploratory and cognitive debriefing interviews were conducted with 27 adults with a confirmed clinical/laboratory diagnosis of HAE (baseline plasma level of functional plasma protein C1 esterase inhibitor [C1INH] <50% of normal without evidence for acquired angioedema). There were 17 participants from the US and 10 from Italy, with mean age 42.5 (SD 14.5) years, range 18–72 years, mean HAE duration 21.3 (SD 14.1) years, range 1–45 years, 67% female, and 44% VAS-naïve. Experience of acute angioedema attacks was first explored, noting spontaneous mentions by participants of HAE symptomatology. Cognitive debriefing of the VAS instruments was undertaken to assess the suitability, comprehensibility, and relevance of the VAS items. Asymptomatic participants completed the VAS instruments relevant to their angioedema experience, reporting as if they were experiencing an acute angioedema attack at the time. Interviews were conducted in the clinic setting in the US and Italy over an 8-month period.

Results: Participants mentioned spontaneously almost all aspects of acute angioedema attacks covered by the four VAS instruments, thus providing strong support for inclusion of nearly all VAS items, with no important symptoms missing. Predominant symptoms found to be associated with acute angioedema attacks were edema and pain, and there was evidence of varying degrees of disruption to everyday activities supporting the inclusion of an overall severity item reflecting the disabling effects of HAE symptoms. VAS item wording was understood by participants.

Conclusion: This interview study explored and reported the patient experience of HAE attacks. It demonstrated the content validity of the four anatomical location HAE VAS instruments and their suitability for use in clinical trials of recombinant human C1INH (rhC1INH) treatment for ascertaining trial participants' assessments of the severity of acute angioedema symptoms.

Cancer patients' perceptions of the barriers and facilitators to patient participation in symptom management during an episode of admission

BACKGROUND:: Symptoms by definition are subjective, and patients' role in their assessment and management will impact on patient outcomes; thus, symptom management is an area of acute care practice where facilitation of patient participation is vital if quality outcomes are to be achieved. OBJECTIVE:: This study originated from a large multimethod research program exploring patient participation in symptom management in an acute oncology setting. The purpose of this article is to explore patients' perceptions of the barriers and facilitators to participating in their symptom management during an episode of admission to an acute oncology ward and the relationships between these perceptions and patients' preference for participation. METHODS:: One hundred seventy-one cancer inpatients consented and completed an interview-administered questionnaire. Patients' preference for participation was measured using the Control Preference Scale. Responses to open-ended survey questions were evaluated using content analysis. RESULTS:: Ten categories were identified in the analyses of patient perceptions of the barriers and facilitators to participating in care decisions relating to their symptoms. Patients, irrespective of their Control Preference, reported multiple barriers and facilitators to participating in their symptom management. CONCLUSIONS:: Patients overall perceived information as the most critical component of participation. Irrespective of patients' preference for participation, there were similarities in the barriers and facilitators to the operationalization of participation in the acute care setting reported. IMPLICATIONS FOR PRACTICE:: Understanding patient perceptions of barriers and facilitators of participating in symptom management has provided important insights into person and system factors in the acute care sector impacting quality patient symptom outcomes.

Patient participation in pulmonary interventions to reduce postoperative pulmonary complications following cardiac surgery.

BACKGROUND: Clinical interventions aimed at reducing the incidence of postoperative pulmonary complications necessitate patient engagement and participation in care. Patients' ability and willingness to participate in care to reduce postoperative complications is unclear. Further, nurses' facilitation of patient participation in pulmonary interventions has not been explored. OBJECTIVE: To explore patients' ability and willingness to participate in pulmonary interventions and nurses' facilitation of pulmonary interventions. DESIGN: Single institution, case study design. Multiple methods of data collection were used including preadmission (n=130) and pre-discharge (n=98) patient interviews, naturalistic observations (n=48) and nursing focus group interviews (n=2). SETTING: A cardiac surgical ward of a major metropolitan, tertiary referral hospital in Melbourne, Australia. PARTICIPANTS: One hundred and thirty patients admitted for cardiac surgery via the preadmission clinic during a 1-year period and 40 registered nurses who were part of the permanent workforce on the cardiac surgical ward. OUTCOME MEASURES: Patients' understanding of their role in pulmonary interventions and patients' preference for and reported involvement in pulmonary management. Nurses' facilitation of patients to participate in pulmonary interventions. RESULTS: Patients displayed a greater understanding of their role in pulmonary interventions after their surgical admission than they did at preadmission. While 55% of patients preferred to make decisions about deep breathing and coughing exercises, three-quarters of patients (75%) reported they made decisions about deep breathing and coughing during their surgical admission. Nurses missed opportunities to engage patients in this aspect of pulmonary management. CONCLUSIONS: Patients appear willing to take responsibility for pulmonary management in the postoperative period. Nurses could enhance patient participation in pulmonary interventions by ensuring adequate information and education is provided. Facilitation of patients' participation in their recovery is a fundamental aspect of care delivery in this context.

Patient expectations and preferences for follow-up after treatment for lung cancer: a pilot study

Introduction

There is no robust evidence to indicate the most appropriate models of follow-up care for patients who have completed treatment for lung cancer. This pilot study aimed to assess expectations and preferences for follow-up care in a sample of patients who had completed treatment for lung cancer.

Method

Thirty-one patients who had completed treatment for primary lung cancer were recruited. A 13 item self-report survey was developed to elicit patient's preferences and expectations for follow-up. Participants completed the developed survey and clinical and demographic variables were collected.

Results

Factors scored as extremely important by over 80% of respondents focused on care coordination: Being able to see the same doctor or health care professional at each visit (24/83%); Knowing which doctor or nurse to contact if queries arise between follow-up appointments (23/82%); and Knowing the patient can book an appointment or contact a health care professional involved in their care regarding health concerns between visits (25/89%). Patients were supportive of nurse-led follow-up when offered in the context of a model of shared care (21/78%).

Conclusion

This study offers new insight into the expectations and preferences for follow-up of patients with lung cancer, with participants indicated preference for intensive follow-up after the completion of treatment.

Challenges of measuring and linking patient outcomes to nursing interventions in acute care settings

Measuring and linking patient outcomes to nursing intervention is an important task that has professional, financial and political ramifications. The importance and complexity of measuring patient outcomes accurately should not be overlooked, as there are a number of emergent factors that influence this process. These include the turbulent context of practise, variations in care due to the large number of health professionals, individual patient characteristics impacting on outcomes, determining appropriate nursing outcome measures, nursing's lack of autonomy within the system and difficulties experienced while trying to link patient outcomes to nursing interventions. So that the results reflect reality, it is important for researchers in the field to take note and consider these factors when measuring patient outcomes. The present article aimed to examine and discuss a number of these factors as they relate to the evaluation of patient care.

Direct patient contacts of dietetic students during their final clinical placement

Direct student-patient contacts, during the professional clinical placement of a Master of Nutrition and Dietetics course, were collected and analysed for the first time using a computerised method. In the final eight-week hospital placement, 26 dietetic students submitted data on direct patient contacts which included: dietetic activities (e.g. assessing, counselling and reviewing); the primary nutritional condition of the patient (e.g. type 2 diabetes and liver disease); and the time spent in contact with patients. The most common dietetic activities were reviews, followed by collection of dietary information and counselling. The most common nutritional condition encountered by students was an inadequate nutrient intake, followed by patients receiving enteral nutrition. Contact time with patients increased over the placement, with proportionately more time spent by students seeing patients independently than when being observed by supervising dietitians. The data collected provided valuable informa tion on the amount of time spent by students in direct patient contacts, the range of dietetic activities undertaken and the amount of time student activities were directly observed. This information will be useful in the development of benchmarks for clinical skill development, hospital and university staff planning and the assessment of the impact of any changes to the format of student placement experience in the clinical setting.

Correction of the copper transport defect of Menkes patient fibroblasts by expression of two forms of the sheep Wilson ATPase

The Wilson disease (WD) protein (ATP7B) is a copper-transporting P-type ATPase that is responsible for the efflux of hepatic copper into the bile, a process that is essential for copper homeostasis in mammals. Compared with other mammals, sheep have a variant copper phenotype and do not efficiently excrete copper via the bile, often resulting in excessive copper accumulation in the liver. To investigate the function of sheep ATP7B and its potential role in the copper-accumulation phenotype, cDNAs encoding the two forms of ovine ATP7B were transfected into immortalised fibroblast cell lines derived from a Menkes disease patient and a normal control. Both forms of ATP7B were able to correct the copper-retention phenotype of the Menkes cell line, demonstrating each to be functional copper-transporting molecules and suggesting that the accumulation of copper in the sheep liver is not due to a defect in the copper transport function of either form of sATP7B.

Physical activity and sedentary behavior: a population-based study of barriers, enjoyment, and preference

The associations of physical activity and sedentary behavior with barriers, enjoyment, and preferences were examined in a population-based mail survey of 1,332 adults. Respondents reporting high enjoyment and preference for physical activity were more likely to report high levels of activity. Those reporting cost, the weather, and personal barriers to physical activity were less likely to be physically active. Preference for sedentary behavior was associated with the decreased likelihood of being physically active, and the weather as a barrier to physical activity was associated with the increased likelihood of sedentary behavior. These constructs can be used to examine individual and environmental influences on physical activity and sedentary behavior in specific populations and could inform the development of targeted interventions.

Number preference in Australian stocks

Stock price rallies/declines often terminate at price levels that are interpreted by many as areas of psychological resistance or support, while an alternative interpretation is that they coincide with price clusters. Some of these price levels tend to repeat with a regularity that is inconsistent with mere chance. In this paper, the existence of price clusters and psychological barriers is tested on a sample of 20 Australian stocks. We consider two number sequences, both derived from a base number of 100, as well as integer price levels. It is shown that Australian stock price data are not uniformly distributed and that for the majority of the stocks, price swing highs and lows are associated with certain recurring price levels. Some of the implications for trading and investing are considered.

Pharmaceuticals and the consumer movement: the ambivalences of 'patient power'

Consumer and patient advocacy groups (PAGs) are important participants in the politics of pharmaceuticals. Yet very little is known about the precise nature and extent of their influence. It is argued in this article that PAGs fulfil a mixed role within the health system at national and transnational levels, and that they are at times fully incorporated into economic and political power structures. Their frequent dependence on pharma industry funding is of particular concern. PAGs provide a means of direct industry interaction with the final customer, thereby partially bypassing and putting additional pressure on doctors and regulators. The article presents the case for research to establish a better empirical base for discussions about the role of PAGs within contemporary neo-liberal governance structures.