Ann-Louise Caress

Involvement in treatment decisions: what do adults with asthma want and what do they get? Results of a cross sectional survey

Background: Current healthcare policy advocates patient participation in treatment decision making. However, in asthma there is little evidence regarding patients’ views on such involvement. This study explored the preferred and perceived level of involvement in treatment decisions, rationales for role preference, perceived facilitators of/barriers to involvement, and the interrelationship of role preference and demographic variables in a sample of patients with asthma. Methods: A cross sectional survey was performed of 230 adults with clinician diagnosed asthma from 10 primary care sites and one specialist respiratory centre in north-west England. Preferred role in treatment decisions was assessed using the Control Preferences Scale. Results: Fifty five (23.9%) preferred an active role, 82 (35.7%) a collaborative role, and 93 (40.4%) a passive role; 19 (8.2%) perceived their role as active compared with 45 (19.6%) collaborative and 166 (72.2%) passive. Only 33.5% (n = 77) of respondents attained their most preferred role; 55.2% (n = 127) were less involved than they preferred. Patient related, professional related, and organisational factors, especially quality and duration of consultations, facilitated or hampered involvement. Role preferences were not strongly associated with demographic variables or asthma severity. Conclusions: This study in patients with asthma highlights the fact that there is a need for professional and patient education regarding partnership working, skilful communication, and innovative approaches to service delivery.

The information needs and preferred roles in treatment decision‐making of parents caring for infants with atopic dermatitis: a qualitative study

Background:  Information needs and preferences in treatment decision‐making of parents caring for infants with atopic dermatitis (AD) are unknown, despite emphasis on quality information‐giving and involvement of health‐care users in treatment decisions.

A qualitative exploration of treatment decision‐making role preference in adult asthma patients

Objectives  To explore preferred treatment decision‐making roles, and rationales for role preference, and to identify perceived facilitators to and barriers from attaining preferred role.

Parents’ Emotional and Social Experiences of Caring for a Child Through Cleft Treatment

Little is known about the experiences of parents caring for a child through long-term treatment for cleft lip and/or cleft palate. We conducted in-depth interviews with 35 parents with children between the ages of 20 weeks and 21 years to explore experiences across the treatment program. We analyzed the data using a constructivist grounded theory approach and present in detail in this article one subcategory from the analysis: managing emotions. Throughout childhood and adolescence, parents experienced conflicting emotions about their child’s impairment, uncertainty about cleft treatment, and stigmatizing attitudes. Although parents attempted to manage emotional tensions by pursuing cleft treatments, the interventions could themselves be a source of conflict for them. We suggest that routine assessment of parents’ emotional and social well-being should be included in cleft treatment programs, and access to psychosocial support made available.

Can lay people deliver asthma self-management education as effectively as primary care based practice nurses?

Objectives: To determine whether well trained lay people could deliver asthma self-management education with comparable outcomes to that achieved by primary care based practice nurses. Design: Randomised equivalence trial. Setting: 39 general practices in West London and North West England. Participants: 567 patients with asthma who were on regular maintenance therapy. 15 lay educators were recruited and trained to deliver asthma self-management education. Intervention: An initial consultation of up to 45 min offered either by a lay educator or a practice based primary care nurse, followed by a second shorter face to face consultation and telephone follow-up for 1 year. Main outcome measures: Unscheduled need for healthcare. Secondary outcome measures: Patient satisfaction and need for courses of oral steroids. Results: 567 patients were randomised to care by a nurse (n = 287) or a lay educator (n = 280) and 146 and 171, respectively, attended the first face to face educational session. During the first two consultations, management changes were made in 35/146 patients seen by a practice nurse (24.0%) and in 56/171 patients (32.7%) seen by a lay educator. For 418/567 patients (73.7%), we have 1 year data on use of unscheduled healthcare. Under an intention to treat approach, 61/205 patients (29.8%) in the nurse led group required unscheduled care compared with 65/213 (30.5%) in the lay led group (90% CI for difference −8.1% to 6.6%; 95% CI for difference −9.5% to 8.0%). The 90% CI contained the predetermined equivalence region (−5% to +5%) giving an inconclusive result regarding the equivalence of the two approaches. Despite the fact that all patients had been prescribed regular maintenance therapy, 122/418 patients (29.2%) required courses of steroid tablets during the course of 1 year. Patient satisfaction following the initial face to face consultation was similar in both groups. Conclusions: It is possible to recruit and train lay educators to deliver a discrete area of respiratory care, with comparable outcomes to those seen by nurses. Trial registration number: NCT00129987

Reflexology and progressive muscle relaxation training for people with multiple sclerosis: A crossover trial

PURPOSE To compare the effects of reflexology and progressive muscle relaxation training for people with multiple sclerosis, provided by nurse therapists, on psychological and physical outcomes. METHODS A crossover design was chosen with a 4-week break between treatment phases. The Short Form 36 and General Health Questionnaire 28 were completed by patients (n=50) pre and post each of the 6-week treatment phases. Salivary cortisol levels, State Anxiety Inventory, systolic and diastolic blood pressure and heart rate data were collected pre and post the weekly sessions. RESULTS All of the chosen measures except for three SF-36 scales recorded significant changes, however, despite the 4-week break (washout period), most outcome measures did not return to their pre-treatment baseline levels. This meant that the analysis of the data was complicated by significant effects involving ordering of treatment occurring for eight of the variables (one from SF-36, two from the GHQ, SAI, Salivary Cortisol, Systolic BP and HR). However, there was a difference in the State Anxiety Inventory values between the treatments of the order of 1.092 units (95%CI 0.211-1.976) (p=0.016, Wilks lambda=0.885, df=1, 48) in favour of reflexology. Changes in salivary cortisol comparing levels pre 1st to post 6th session favoured reflexology (95%CI 0.098-2.644) (p=0.037, Wilks lambda=0.912, df=1, 48). A significant difference was found in the way the treatments affected change in systolic blood pressure following sessions; this favoured progressive muscle relaxation training (p=0.002, Wilks lambda=0.812, df=1, 48). CONCLUSION Positive effects of both treatments following sessions and over the 6 weeks of treatment are reported, with limited evidence of difference between the two treatments, complicated by ordering effects.

Perceptions, experiences and needs of patients with idiopathic pulmonary fibrosis

Aims To understand the perceptions, needs and experiences of patients with Idiopathic Pulmonary Fibrosis. Background Idiopathic pulmonary fibrosis is a progressive interstitial lung disease, with a mean life expectancy similar to some forms of cancer of 2–4 years from diagnosis. Unlike the cancer literature, which is rich with studies exploring the needs of their disease group, few publications exist on patient needs with this severe fibrotic lung disease. Design A Qualitative study which took place between 2007–2012. Methods Seventeen patients with a multidisciplinary team confirmed diagnosis of Idiopathic Pulmonary Fibrosis, with moderate to advanced disease severity and six of their informal carers were interviewed. An interview topic guide was developed by the researchers and service user group. The interviews were audio-recorded, semi-structured and took place at a regional respiratory and lung transplant centre in North West England. Interviews were transcribed verbatim and data analysed using Framework Analysis. Findings Three main themes were identified: ‘Struggling to get a diagnosis’; ‘Loss of the life I previously had’; and ‘Living with Idiopathic Pulmonary Fibrosis’. Patients reported struggling to get a diagnosis and coping with a life-limiting, rapidly progressive illness with no good treatment and few support structures. Conclusions There is an urgent need for a better understanding of the difficulties faced by people with Idiopathic Pulmonary Fibrosis and their carers. This can be used to develop better supportive care in the United Kingdom and ultimately improve the quality of life of these patients.

Validity and Reliability of the St. George’s Respiratory Questionnaire in Assessing Health Status in Patients With Chronic Pulmonary Aspergillosis

BACKGROUND Chronic pulmonary aspergillosis (CPA) markedly reduces lung function through progressive lung destruction. To date, however, health status in patients with CPA has not been studied. This is due, in part, to a lack of adequately validated scales. The St. Georges Respiratory Questionnaire (SGRQ) is widely used for several chronic respiratory diseases, but not for CPA. We examined the reliability and validity of SGRQ in CPA. METHODS Eighty-eight patients with CPA completed the SGRQ, the Short Form-36 Health Survey (SF-36), and the Medical Research Council (MRC) dyspnea scale. Lung function and BMI were also measured. Pearson correlation, t test, analysis of variance, and their equivalents for nonparametric data and multivariate linear and binary analyses were used. RESULTS The SGRQ components (symptoms, activity, and impact) and total scores achieved high internal consistency (Cronbach α = 0.77, 0.91, 0.86, and 0.94), and SGRQ components had good intercorrelation (r ≥ 0.41; P < .001) and correlated well with the total score (r ≥ 0.63; P < .001). There were high, intraclass, correlation coefficients for the total SGRQ and its dimensions (≥ 0.92). The SGRQ scores showed significant correlation with the MRC dyspnea scale and SF-36 components and differentiated between all grades of shortness of breath and different bands of disease severity (P < .05). In addition, patients with greater clinician-rated disease severity had more impairment of health status (P < .006). CPA severity was independently associated with impairment in health status, and COPD comorbidity significantly affected the health status in patients with CPA. CONCLUSIONS SGRQ demonstrated a significant level of reliability and validity in measuring health status in CPA.

Shared decision making or paternalism in nursing consultations? A qualitative study of primary care asthma nurses’ views on sharing decisions with patients regarding inhaler device selection

Background  Although patients with asthma would like more involvement in the decision‐making process, and UK government policy concerning chronic conditions supports shared decision making, it is not widely used in practice.

Understanding the experience of patients with chronic obstructive pulmonary disease who access specialist palliative care: A qualitative study

Background: Palliative care for people with life-limiting non-malignant disease is increasingly prioritised. People with end-stage chronic obstructive pulmonary disease are among a key group of non-cancer patients likely to benefit from specialist palliative care, but it remains uncertain whether the needs of this group are met by existing services. Aim: To evaluate the experiences of patients with chronic obstructive pulmonary disease who accessed specialist palliative care. Design: Data from semi-structured interviews were analysed using a hermeneutic phenomenological approach. Setting/participants: Eight patients accessing specialist palliative care within one city in North West England. Results: Perceived benefits of specialist palliative care included reduced frequency of hospital admission, improved physical and psychological symptoms, reduced social isolation and a broadened physical environment. Participants were mainly aware of their poor prognosis, but discussion of referral to palliative care sometimes caused distress owing to the historical associations between dying and hospice care. Following engagement with services, participants’ perceptions changed: palliative care was associated with social inclusion and opportunities to engage in reciprocal and altruistic social action. Negative associations were replaced by uncertainty and anxiety about the prospect of discharge. Conclusions: Much within existing services works well for people with chronic obstructive pulmonary disease, but opportunities to enhance palliative care for this underserved group remain. Future research might focus on prospectively evaluating the impact of key components of palliative care on core patient-centred outcomes. Additionally, work must be done to raise awareness of the benefits of specialist palliative care for non-cancer patients, as negative associations can form a barrier to access.